Spondyloarthritis treatment

[Mhairi54]

Morning. I've received my MRI report but don't see my consultant until next week. The report says my results are consistent with Spondyloarthritis but doesn't give any clue as to what she's thinking about treatment wise. Just wondered if there's anyone on here that has Spondyloarthritis, and what treatment they are on, or what they were started on? Getting myself in a bit of a state at the thought of some of the side effects on some of the treatments they might try eg methotrexate. Thanks.

[oldtimer]

Have a search for some of the posts on spondyloarthritis. There are quite a few on here.

You could make a for and against chart of the reasons for taking the medication and the reasons against. You might be surprised how your fears become more balanced against the advantages of treatment.

[Mhairi54 in reply to oldtimer]

Definitely want treatment of some kind. Can't keep going with this much pain. Continues to have such a big impact on my life. At last appointment, she was querying whether it was ankylosing spondylitis I had. If it was, she was going to recommend going straight to a biologic as research has shown it's more effective in the treatment of AS. So at moment just trying to figure out whether it's more likely to be a DMARD or a biologic that will be recommended for me.

[Hidden in reply to Mhairi54]

I believe the NICE guidelines do allow a 'jump' to biologics for patients with AS.guidelines. They are generally damn good drugs IMO. And Mtx gets an undeservedly bad press, some cannot tolerate it but plenty can. I've been on it on & off for over 4 years with zero side effects. I hear that Mtx is more likely to help peripheral inflammation i.e. feet, knees, hands etc.

I have PsA which is a spondyloarthropathy and take Mtx alongside Humira. I started on a combo of prednisone (short course) and Mtx, then tried 2 more DMARDs before Humira. But personally I wouldn't want to mess with AS or indeed any other form of inflammatory arthritis. Every time I convince myself that mine is on the wane it does something nasty to remind me what a total swine it is. Irreversible joint damage is a real & constant risk. And many people find biologics to be an absolute godsend, including me for sure!

I always think of the level of systemic inflammation caused by moderate to severe inflammatory arthritis as being 'toxic' in itself. It just plain messes you up. Were the disease not so damaging I'd probably forego the drugs ... but as it is I feel considerably healthier & happier all round on these drugs than I did before I got diagnosed. You might say that the disease itself has a fair few evil 'side effects'!

[Fennella02 in reply to Hidden]

I agree about the MTX. It's good stuff, easy to control the dosage, easy to administer etc. My Rheumy told me at the outset that it should be rebranded for the purposes of rheumatology to avoid the phobias & fears of its chemotherapeutic origins. Certainly I was one of the phobics and I regret having been so neurotic about it.

[Mhairi54 in reply to Fennella02]

Think that's been the basis of my fears too to be honest. But also have read loads of posts on here that are so positive about Mtx. And Suzannedales post was great to read the other day!

[helixhelix]

Look at the potential side effects from things that we take without thinking, like paracetamol, and you might realise that MTX is not that bad or unusual. There's a lot to take in getting a diagnosis of a chronic disease, so it easy to get bogged down by the negatives. You'll cope, and it'll be fine. The vast majority of us do, once we've got over the shock & panic.

[Mhairi54 in reply to helixhelix]

Very true helixhelix, hadn't thought about it like that. My husband always says I worry about things too much before they've even happened. Think I just need to chill out a bit and cross that bridge if it does come to it. Thanks.

[earthwitch]

Check out the National Ankylosing Spondylitis Society website - nass.co.uk/ as that will give you far more relevant information than any RA group or website (though stick around here just for the general support from others who understand living with inflammatory arthritis). NASS also have a really great helpline. Spondyloarthritis is the general term for the group of diseases that includes AS and PsA, but all are treated in pretty much the same way. First line treatment is usually NSAIDs at full prescription doses, though as you are probably aware, not many people tolerate taking these long term (I managed 5 years). MTX and SSZ are also often tried as they can provide some benefit (and are a whole lot cheaper than anti-tnfs) - MTX will often give a lot of relief for peripheral symptoms, i.e. hands and feet, but not usually the spine. SSZ is often prescribed if you have associated gastrointestinal stuff going on as it does help with inflammatory bowel disease which can go hand in hand with spondy. So both of these are worth trying. Unless you are being seen by an early inflammatory arthritis clinic that has a research component, you probably won't be offered antitnfs until you have exhausted NSAIDs and tried MTX or SSZ, though there seems to be growing evidence that early use of antitnfs can be very beneficial. You might want to check whether you are under the care of a spondyloarthritis clinic (sometimes called early inflammatory arthritis clinics) or a rheumatologist who has a specific interest in spondyloarthritis. If not, then you may want to ask whether it would be more appropriate to be transferred to the care of a spondyloarthritis clinic. I'm quite aware that a lot of folk with spondy in the UK tend to just get treated as if it was seronegative RA going through loads of DMARDs without a lot of success (they really don't have the same disease modifying effect on spondy as they do on RA). You really do want to be under the care of a rheumatologist who is up on the latest understanding of spondy treatment, and sadly not all rheumatologists are.

Definitely consider joining NASS - they have a great magazine, and their website has a heap of information, plus I have personally found their helpline invaluable (I have AS). They also have regional groups that can be a great support and sometimes have group exercise classes as well (and appropriate exercise and stretching is one of the absolute best things you can do to help yourself stay flexible and avoid long term disability).

Good luck on your journey. Try not to get too worried about the future - remember that the bad stories you hear are really the tip of the iceberg and many people with spondyloarthritis are actually well controlled by meds and just getting on with their life.

[dhall54]

I was diagnosed with spondyloarthropathy after three years of being misdiagnosed with polymyalgia rheumatica. The rheumatology dept classify it as ankylosing spondylitis (but only really because it makes it easier to apply for biologics as and when they might be necessary in the future)

I was put on mtx when my diagnosis was just a general seronegative inflammatory arthritis but when a spinal MRI showed similarities to what you would find with AS the registrar added 1000mg daily Naproxen. I had no problems with mtx but as I had been told it was ineffective for AS but good for peripheral arthritis I began to wonder if it was necessary. Another registrar suggested I stop taking it to see how I felt. Which I did in April with no ill effects. I was, however, uneasy about taking high doses of NSAIDs together with Omeprazole and so stopped taking that about six weeks ago. And again I have been fine without it (though I'll see what the hospital has to say about that at my next appointment)

I wouldn't have stopped taking the medication, though, without doing a lot of exercise to compensate. I have a weekly session of hydrotherapy organised by NASS at my local hospital pool and do yoga and Pilates as well as strengthening exercises at the gym. I have also found NASS's Back to Action app absolutely invaluable. For me the exercises work better than pain relief.

I should add, though, that I don't think my pain is as bad as others who have had AS since they were young - I don't have any back pain in bed, for example. And it may also be that the drug treatment I was on may just have brought about a partial remission. If I ever get as bad as I was when I was basically brought to my knees out of the blue one day four years ago I would not hesitate to take mtx and - with stronger reservations - Naproxen.

Good luck with your treatment. It takes a while to adjust psychologically to a diagnosis but once you get over the initial sense of a kind of bereavement it's amazing how quickly you can get back to a sense of normality. Now download the Back to Action app!